I suffered optic neuritis June 16. CIS diagnosis Oct 16, repeat mri with contrast (first mri through ophthalmology no contrast aug 16 showed a number of white matter lesions, but apparently non specific in distribution and some ovoid in shape) and lumber puncture feb 17. Positive bands and new enhancing lesion found. At neuro appt mar 17 told probably ms, but that they hadn’t tested csf (neuro was fuming) but used frozen sample, so found out positive bands via letter in jun 17. Multiple discipline meeting confirmed new enhancing lesion after review, letter received July 17. Next neuro appointment sep 17, confirmed ms. Just literally had results of mri contrast from December via letter, no new lesions, good news. However, I’ve new symptoms developed jan ( so after last mri ) which may or may not be ms related. Wait from seeing neuro when diagnosed sept 17 to next appointment, which is June 18.
I think everyone is different and I don’t think you can compare. I’ve read 50% of people (on average) who suffer an episode of optic neuritis convert to ms, but the timeframe can be anywhere from less than a year ( which in affect I was) to 15 years. In terms of the two separate things, this relates to the separation in space. So, my understanding is multiple sclerosis is a separation in time and two separate parts of your nervous system.
Only a neuro can diagnose you. It might not be ms, as other illnesses can cause lesions and optic neuritis. Have you had loads of blood tests yet? You say your sight hasn’t recovered, did it the first time? I must admit mine pretty much recovered after a number of weeks , with the residual colour contrast taking about a year to come back. I have a slight haziness - but can read down the chart the same as the other uneffected eye, which sounds weird I know, eye optician explained that’s the damaged nerve causing faulty signal transmission.
I remember the feeling of limbo, well actually to be honest I still feel in limbo. I’m not sure the type of person you are, but having some questions to ask the neuro ready beforehand is I think a good thing. You say you are going back to your gp, but aren’t you been reviewed by a neuro again?
Its a fine line between reading up and getting worked up and worrying thou, I definitely crossed it. It’s tough and definitely an unpleasant experience. I just got on with my live and did the same things best I could. I wish you luck.